Good Afternoon,
--I am a Graduate Student in Virginia assisting a distinguished professor at my University (who has had Chronic Lyme since 1989, with two of her daughters post-infection also having Lyme) doing research on academic performance in school for children with Lyme Disease.--
**We are desperately asking *Parents* with children who have had Lyme or have Disseminated Lyme Disease to take an anonymous survey online (about 20 minutes) addressing the following:**
------There is very little research on the effect of Chronic Lyme Disease on school performance in children.
--The general consensus has been that children fare much better than adults when they contract disseminated Lyme.
-------Research is just now beginning to show that this isn't necessarily true.
--Although there have been some neurological and neuropsychiatric studies, there are few studies that examine the effect of the disease on children's school work.
-------This is an important area to investigate since the disease affects the brain and cognition, and thus children's ability to solve problems and think critically, which are considered "21st Century Skills."
Here is the link to the information on 21st Century Skills: http://www.p21.org/
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Parent/Guardian Online Survey Participation Form
Identification of Investigators & Purpose of Study:
You are being asked to participate in a research study conducted by Diane Wilcox, an Associate Professor in the College of Education at James Madison University.
The purpose of this study is to examine how Lyme Disease affects children’s school performance.
Research Procedures:
To participate in this study, you will need to complete an online survey.
Betty added from survey:
If your child contracted Lyme Disease while in school, please complete the survey even if your child is now an adult.
If you have a younger child (under 4 years old), please do NOT complete the survey, but please email me if you would like to be interviewed: wilcoxdm@jmu.edu.
The survey questions (15 questions, 4 are multi-part) are linked to specific competencies that many educators feel are essential in order for children to be competitive in school and at work upon graduation from high school.
The email containing the survey link is being sent to Lyme Disease associations and support groups nationwide.
Time Required: Participation in this study will require approximately 20 minutes of your time.
Risks:
The investigator does not perceive more than minimal risks from your involvement in this study.
Benefits:
Potential benefits from participation in this study include identifying the many ways Lyme Disease affects children’s performance in school. This information may inform school policy on accommodations.
The results of this research will be presented to JMU’s College of Education. In addition, results may be presented at Lyme Disease Association meetings, at professional conferences, and may be submitted for publication.
Confidentiality: While individual responses are anonymously obtained and recorded online through Qualtrics, data is kept in the strictest confidence.
No identifiable information will be collected from the participant and no identifiable responses will be reported.
All data will be stored in a secure location only accessible to the researcher. The researcher retains the right to use and publish non-identifiable data. At the end of the study, all records will be destroyed.
Final aggregate results will be made available to participants upon request.
Participation & Withdrawal: Your participation is entirely voluntary. You are free to choose not to participate.
Should you choose to participate, you can withdraw at any time without consequences of any kind. However, once your responses have been submitted and anonymously recorded you will not be able to withdraw from the study, and your answers cannot be retracted.
***Questions about the Study: If you have questions or concerns during the time of your participation in this study, or after its completion or you would like to receive a copy of the final aggregate results of this study, please contact:
Diane Wilcox, Associate Professor
Learning, Technology & Leadership Education, College of Education
James Madison University
wilcoxdm@jmu.edu
Questions about Your Rights as a Research Subject:
Dr. David Cockley
Chair, Institutional Review Board
James Madison University
(540) 568-2834
cocklede@jmu.edu
Giving of Consent: I have been given the opportunity to ask questions about this study. I have read this consent and I understand what is being requested of me as a participant in this study. I certify that I am at least 18 years of age. By clicking on the link below, and completing and submitting this anonymous survey, I am consenting to participate in this research.
http://jmu.qualtrics.com/SE?SID=SV_d1eqe9551Gppv8g
Post edited by: Bettyg, at: 02/13/2011 03:04 PM
